Wednesday, April 22, 2015

Neurosurgery and Opthalmology Updates

We've had two doctor appointments that I'd like to share.  The first is that both kids had their annual appointments with Dr. Myseros, their Neurosurgeon last week.  Although they were not very well behaved in the appointment, it was good to catch up with him.  He said both kids are looking good and he'd like to see us again in a year.  Before the next appointment he'd like us to do another brain scan for Cole to verify how his shunt is functioning.  A few months ago we had a scare where Cole was complaining of intermittent head aches and even threw up once.  I know someone whose son recently died from a malfunction, a friend who's daughter had to have surgery last week because of a malfunction and I had a meeting yesterday with a colleague who is waiting for an evaluation next week and expects to have her entire shunt replaced.  The fact that this can and WILL happen is very real and always in the back of our minds.  My friend recommended we start talking with him about his shunt and what it is so when we do have complications it's a little less scary.  Luckily we have a great book called Me and My Shunt that we plan to start reading to both kids to teach them about Cole's shunt.

I had numerous phone calls with the new nurse practitioner, Devon, about the headaches and whether we needed to bring Cole in for test to determine if he was having a malfunction.  She was great about following up with me and asking lots of questions. Given the head aches onset quickly and then stopped we decided to wait and just track the frequency and duration.  There is a test called a shunt series that will determine if a shunt is malfunctioning, but they were worried if he wasn't having symptoms that the test wouldn't catch the problem.  When we walked in to the appointment and I saw Devon I immediately realized I knew her.  I looked at her and said, "Children's Hospital, 2009, Neuro Floor, yes?"  She looked at me dumbfounded and said, "I did work there then, why".  I told her that she was Reagan's nurse for several days both before and after her brain surgery.  I told her how much we appreciated everything she did for us then.  She felt terrible because she didn't recognize us, but as we were leaving she apparently looked up Reagan's chart and did find her notes from several days during Reagan's stay.  She seemed very happy to hear we remembered her.  Small world!

We also had a follow up appointment this week for Cole with Dr. Jeffries, his opthalmologist.  We go every six months with dilation every year.  It was another frustrating appointment and yet another good learning experience.  I prepared Cole for what to expect, but they insisted on doing the vision test starting from the furthest point (sitting in the chair) to see how well he could read the pictures on the monitor on the far wall.  Unfortunately because it's so hard for him to see he gets very frustrated very quickly.  After some coercion we moved him more than half way to the monitor and were able to start getting him to focus on the task and complete the exam.  There was a second exam/machine that required him to put his chin on a shelf, his forehead against a bar and look into a small hole at a picture.  Unfortunately we were not able to get him to complete this test and will try again at our next appointment.  Hopefully I will be able to convince them to start closer to the monitor next time to prevent the frustration and meltdown.

Although I often hear 20/20 vision and know that means you have "perfect vision" I never researched what it means if you don't have perfect vision.  Obviously I have 20/20 vision or I would probably know this.  So a quick search on the measurements reveals the following information.  If you have 20/60 vision it means you can see at 20' what most people can see at 60'.  So you have to be closer than most people to see the same image.  You are considered legally blind when you have 20/200 vision.  Unfortunately Cole has 10/200 vision, which means that he sees at 10' what what most people can see at 200'.

As his mom, I worry about how he's going to get to work if he can't drive.  Where he's going to have to live to have access to a bus or a metro.  I worry about how he will take a girl on a date.  I worry about how he will take his kids to Tae Kwon Do practice.  But I try to remind myself how lucky we are that he is here.  I try to remind myself how luck we are that he has any sight. And although I know we have so much to be thankful for, it's still so very difficult to feel like your child will have so many more challenges than most kids.  But we take it one day at a time, we advocate as best we can, and we try to realize how far he has come.  And it is so apparent in this side by side picture!  It was recommended that our next step is to see a low vision specialist to start learning what tools and resources are available to people with visual disabilities.  I called and made an appointment with Dr. Alibhai at Low Vision Services in May and look forward to making new connections.  I will post another update next week after meeting with the Neurologist!

Easter and the Tooth Fairy

It feels like a long time since I've posted an update and I have several to share!

The first was a really nice Easter spent with family.  The kids were pretty excited that the Easter bunny left them baskets and we had a lot of fun doing three different egg hunts this year to include one with Emma and Luke Golino at the Algonkian Golf Club.  We had a lot of fun dying eggs and picking funny face stickers for each one.

Another big update is that on April 9th, at age 5, Reagan lost her first tooth!  She was super excited when it started getting loose about two weeks ago.  She was in Tae Kwon Do class when it shifted and was sticking straight out.  Daddy pulled it quickly and she went to the bathroom to clear the blood.  She was pretty excited to see that the Tooth Fairy brought her a $2 bill!  Many of her friends at school had already lost teeth so she was very excited to be part of the "club".

I've promised to start including funny quotes from the kids.  Cole had a funny one this week.  He unfortunately wet his pants.  I asked why he had an accident and he said, "Mom, it's not my fault, I didn't do it.  My penis did it!"

Spring Break 2015!

We decided to join the rest of the married with children families this year on the annual Spring Break Trip 2015!  We had a great time but I think the big lesson learned is that weather is not predictable in Va/Md in March.

We decided to go to Cambridge, MD for a few days to get away and have some good quality family time.  We stayed at the Hyatt Regency Chesapeake Bay and although the weather was a little rainy and cool, we had a great time!

We had a great fun playing putt putt, walking on the beach, searching for sea shells, learning how to play chess, playing tennis, and swimming in the pool.  We also went to see a new movie called Home and it was the first time Cole was able to watch an entire movie!  We had a great time and wished we had more time.  Definitely worth going back!

Monday, March 23, 2015

Saying good-bye to a fur friend is never easy...

After 15 years, 1 month and 7 days with us, our loyal fur friend Cooper has gone over the rainbow.  He was diagnosed with a brain tumor two years ago and was put on seizure medication.  He also had significant thyroid issues and was being medicated for it.  A year ago he had a vestibular event and was unable to walk.  Although medicine helped, he has been declining slowly over the last two years.  Cooper was born November 4th, 1999 and was adopted from the Homeless Animal Rescue Team on February 14th, 2000.  He shared so many happy memories over those 15 years and was definitely a great shoulder to cry on during the many tough times too.  He was laid to rest on March 21st, 2015.

I find it remarkable after losing someone how many conversations remind you of the relationship you've had over the years.  My friend Vicky reminded me how many long hikes we used to take with Cooper and his friend Max.  They would run through the woods, chase squirrels and swim in the river.  Cooper would run like a deer bounding over the brush without his leash and always came back.  Johnny reminded me of the night we went out to dinner and got back to the house to find Cooper sitting in the doorway with the door wide open!  Clearly it hadn't been shut/locked and he was just sitting there waiting for us to get home.  He was truly a one-of-a-kind dog.  We could let him out to do his business and even with woods in our backyard on Quiet Brook Place he would do his business and come back to the door and push it open with his nose.

The memory I love is one night shortly after Reagan was born that we realized he wasn't sleeping in our bedroom (which he always did).  We had to search for him and we could see him on the baby monitor lying in front of Reagan's crib.  He often would sleep in Reagan's room and was very excited when she moved to a bed and he could climb in with her.  And when Cole came home from the hospital we often would see Cooper go from one of their bedrooms to the other while they were sleeping.  Another memory that makes me laugh is Cole tipping over Cooper's dog dishes and putting all his food in his water bowl to see it float.  Cooper so faithful to the kids and you could tell he loved them dearly.  Over the years he was affectionately called "Coopy" by the kids.  Although Johnny had dogs as a kid, this was my first dog and our first "child" together.

I also find it interesting to reflect on when we miss him most.  It's amazing how many times over the last two days I caught myself thinking I need to let him out.  Or, did I give him his medicine?  Or giving him the leftover dinner food in his dog dish.  Giving him the crust from your pizza was always expected!  And of course not having him follow me or sit at my feet under my desk when I work will be a tough adjustment.  It also became a tradition three years ago to come to the school bus to get the kids.  Today was especially hard when Reagan got off the bus and said it was so sad to not have him there to greet her.

Reagan has taken it especially hard, but the kids have been pretty understanding.  They are asking good questions and I think they are handling it well.  Reagan has asked numerous times when we can go visit him in Heaven.  Of course I tell her it's going to be a VERY long time and I get to go first !  I also remind them that Kendall has never had a dog…now she gets to be with Cooper and he can take care of her!  Cole's questions are very telling about their personality differences.  His first comment after we told him Cooper had to go to Heaven was, "can we get another dog? We should name him Nova."  We talked about how we can't go to Heaven because only your spirit goes to Heaven.  So his next question was, "well then what did the vet do with his bones?"  Quickly followed with, "so how do you get to Heaven if you don't have bones?"

Cooper was truly our best friend and will never be forgotten.  We love you !